HIV Positive, Widowed, and Living a New Life

By Myles Helfand

About Barbara Age: 43Home: Orlando, Fla.Diagnosed: September 1996

Barbara and her husband, Danny, were diagnosed with HIV in September 1996. "He thought once he got on the medications he would get better ... but he was not getting any better," Barbara says. Danny died due to AIDS-related complications six months after his diagnosis. Since then Barbara has fought back against HIV and grief. She has successfully adjusted to life as an HIV-positive single woman, even though in the beginning, she didn't think she'd ever be able to live alone. Her first book, A Survivor's Guide for Single Women: A Common Sense Approach From an HIV-Positive Woman, chronicles her battle against loss, anger, depression and HIV itself, as she learns to cope with her illness while maintaining her longstanding housecleaning business. She says, "If I can [deal with this illness] -- hopefully it will encourage other women that they can do it too. I hope to let them know that there are a lot of support systems out there." To read an excerpt from her book, click here.

What made you decide to write this book?

I was watching the last episode of the first season of "Survivor," and it was like the Lord just said, "That's you; you are a survivor dealing with HIV." So I was inspired to start writing about how I'm surviving.

So many women out there have HIV yet don't tell their stories. Why did you feel you needed to get your story out?

"In dealing with this illness -- if I can do it -- hopefully it will encourage other women that they can do it too. I hope to let them know that there are a lot of support systems out there they can get. ..."

I did it more as a teaching tool, because I never thought I could live on my own. I lived at home until I got married; I never thought I was capable of living on my own without being married. I never had enough self-confidence to live on my own, so I am very thankful that, daily, I can get up, go to work and pay my mortgage.

In dealing with this illness -- if I can do it -- hopefully it will encourage other women that they can do it too. I hope to let them know that there are a lot of support systems out there they can get. I hope to encourage them that, although having a man in your life is helpful for, like, opening up jars and stuff, they can make it on their own. But it's just so funny that I never thought I could do it on my own, and it'll be ten years in March that I've lived on my own. I even bought my own house.

How did you go about writing your book and publishing it?

Oh, my Mom and I did it together. I with pencil and paper and she on the computer. I figured, "We can do this!" I outlined it like it was a homework assignment. Also I chose three people to help me edit the book. That part was frustrating, because I'm an anxious person; I want it done, like, now.

Linda P. [Linda Potkovic, a health educator on HIV/AIDS and women's issues] was one of the last people to look at the book; if she liked it then I knew I had a good product. And her approval meant so much to me. She's the one who turned me on to the TV show "Survivor," because I do the women's panel at UCF [University of Central Florida].

What is that? The women's panel at UCF?

It's an HIV/AIDS ed. class. Each semester they have a panel of people, like men that have HIV. And the class asks these men on the panels questions. It gives them a face, it gives the students a face of a person who has HIV. Then they have a women's panel, which I've been on for awhile now; it's usually me and two other ladies. Students can ask us questions about our HIV and how it affects us and our families. They usually ask very good questions, and, like I said, it gives the class a face to the disease. They're surprised we're not, like, crack addicts or prostitutes, so it's very good. Linda P. is one of the facilitators there.

I knew Linda from CENTAUR, a group here in Orlando that updates you every couple months on medications, what's going on in the medical field -- there's a lot of local support here in Orlando for people that have HIV. I really like it here because of that. That's where I met her, and she asked me, "Would you like to be on the women's panel?" and I said, "Sure." And I was scared to death; I cried for the first two years. Now I don't cry so much.

"It's a little overwhelming whenever I start talking about my husband, because of the way he died. He was such a healthy man; he was like 155-60 pounds, and he died at like 125 pounds. He just wasted away. So whenever those questions about Dan were brought up, I would just start crying."

Were you crying because it was so difficult to recount everything?

Yes, it's a little overwhelming whenever I start talking about my husband, because of the way he died. He was such a healthy man; he was like 155-160 pounds, and he died at like 125 pounds. He just wasted away. So whenever those questions about Dan were brought up, I would just start crying.

How did you start distributing your book?

That was easy; I like to talk on the phone. I just opened up the Yellow Pages and started calling bookstores. I said my name was Barbara Cusack, I just wrote a book, I'm a local author, told them what the book's about. Mom made up flyers and promo packages. I called up churches, and got a positive response. This little business is paying for itself; I'm really proud of that. I've learned a lot of patience.

I guess you'd have to have patience in the publishing industry.

Well yes, but when you tell people you wrote a book, they're like, "Oh, I've always wanted to do that!" Plus I can let them know: This is what I've gone through. It's really no big deal. You can do it on your own. I figured that'd be a lot of stress, if I went ahead and mailed my book out to a whole bunch of publishers and they rejected it. I didn't want to have to deal with that rejection; I figured having HIV is the biggest rejection that I could have. So this way may take longer, but hey, you contacted me. It'll get there.

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